by: dawn shirley, whitney goulstone
when quinn was born in january 2016 at victoria general hospital, we thought everything about her was perfect. she acted like any other newborn for her first few weeks but as her mother, i soon noticed something was wrong. her condition continued to worsen and just three weeks later she was admitted to the pediatric icu.
fortunately, an experienced immunologist observed her symptoms and suspected she may have severe combined immunodeficiency — commonly known as scid. because of this early diagnosis, quinn was able to receive life-saving treatment and now lives a healthy life on vancouver island.
sadly, other babies born with scid in b.c. are not as fortunate as her.
even though scid is a rare disease, you might remember media coverage of the “bubble boy” in the late 1970s. david vetter was born in 1971 in texas and lived most of his life in a sterile plastic environment. sadly, he died in 1984 at the age of 12, but during his short life, knowledge about this disorder and potential treatments significantly advanced thanks in part to research and advocacy by his family.
babies with scid don’t produce enough immune cells to protect their bodies from infection which makes it difficult for them to fight any viruses or infections. many of the safety precautions we’ve had to take to prevent the spread of covid-19 like isolation and wearing ppe are part of the daily routines that families living with scid follow religiously to keep their babies from getting sick. the fear and isolation we’ve recently experienced from the pandemic is not new to families who have been living with this disease.